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Counting the cost

I have been having the strangest feelings lately. I keep looking around our home and all I feel is a sense of sorrow, I feel like I am seeing my home for the last time. I know that is silly, but almost every room was decorated by me, my choice of colours and mainly my handiwork. In just a few days someone will be here hiding it under a fresh coat of paint and what “I” did, will be gone. Yes, they will be painting on the colours that I have chosen and they have promised, to protect the three-inch border that I hand painted around our bedroom, and not to touch the paintwork in the living room that I spent so long making look as though it was painted 100yrs ago, and no-one has touched since. But it’s still not going to be the home that I put together, it will be different.

10 years ago, I was locked away from the outside world and I doubt that there will be many out there who even remember that I existed. Now, somehow, it feels as though I am starting to be erased from the small part of this world that I still exist in. I know that is so silly, but feelings are the most illogical of things, and once these guys have finished, it will still be my house, just a little less “my” home.

Right now we were supposed to be in full painter mode, and it’s not. Everything went on hold late last week when I had a phone call saying that they wouldn’t be able to start on time, due to the job they were doing being mainly out doors and thanks to the weather, they were way behind. We have had nothing but rain for the past two weeks, but no matter what happened they will be here next Monday. The week’s delay is in some ways a huge pain in the butt, but in other, has allowed us more time to do silly bits and pieces that once completed would allow the work to proceed more smoothly. When I say work, I really mean Adams work, he will, after all, be the one who will be moving stuff around so that the painters can move from job to job.

John, one of the owners of the decorating company was here this morning and I am finding myself once aging starting to panic about how it is all going to actually work. We have so much stuff and a huge proportion of it is breakable. It’s as though I hadn’t really seen it until now, which I know is stupid, but until now, it was more something that was happening somewhere out there, one of my dreams not something that is real, something that is actually about to happen. Oddly, the more real it gets, the sicker I am feeling and I do mean sick. I have even been waking up at night feeling as though I was about to throw up, and I keep desperately wanting to go and lie down on my bed. I’ve looked for other reasons and I can find none. It has to be a prolonged panic attack as I can think of nothing else that could be causing it.

I can even pinpoint the day that it started. I had invited a few handymen to come round and give me a quote for some smaller things that needed doing. The second guy was great, really friendly and gave both of us the confidence to say “Yes, you are the person we are looking for”. We arranged for him to be here this Thursday as painters wouldn’t be here, and then I mentioned we also needed a new floor to be laid in the kitchen and what roughly he would charge for the job. Before I knew it, I was agreeing to him being back here the Tuesday after the decorators leave, to do that work as well. Slight problem, we hadn’t even chosen the floor we wanted. By teatime on Sunday, we had chosen it, paid for it and the stuff required to fit it. I know it hasn’t, but that kind of pressure is exactly the pressure I have felt bearing down on me since the money left to me by my mother, hit my bank account.

I don’t know a single chronic illness that isn’t made worse by stress, but even our governments seem to be out to make sure we have loads of it. Part of the problem is being caused by the fact that I am on benefits. If you receive an inheritance it can mean losing then, until you have used it all to live on. There are though certain things that you can do, that will be accepted and not seen as trying to rip off the country. Our case, of using the money on household repairs and decor that hasn’t been touched, due to not having the funds as I don’t work, is allowed. We have only been spending on things that were either dangerous, as in the kitchen floor and replacing of tatty rugs, repairs such as the plaster that is at this second held to the wall by a thread in both the living room and kitchen, and making what was a dumping area into a useable space, are all OK. As are of course the medical aids I bought, Once it is all done, well what is left over the £6000 we are allowed to have in our bank accounts, will go to paying off another chunk of our mortgage, also allowed. But the pressure of documenting everything, keeping accounts to show what it was spent on, is just another pressure I could do without. It has to be done though, just in case someone asks any questions. Nothing is easy for us, the second we are too ill to work, we aren’t allowed to have anything that is private, especially not our finances. I’m just waiting for the day they want to install web cams, just to make sure you’re really as ill as you say.

23 thoughts on “Counting the cost”

Nothing ever runs smoothly with renovations…….and I still thi k it would be worth a thought to have a carer get you out once in a while. Pick a cafe……and become a familiar face. The more you get out the less stupid looks and questions get to you. My regular Wednesday post location walk in and the newish staff greet me with a “Hi Helen!” I imagine the longer employed staff have filled them in with enough info to not need to pester with questions. Cheers,H

The problem is I can’t physically get out of my flat. We live on the second floor and I can’t get down the stairs. That’s the reason why I only go out if I’m going to hospital as the Ambulance supply a stair climber and when they break down, which they do a lot, they supply 4 strong guys to carry me.

The looks never bothered me, people have stared at me for most of my adult life. Being a rather eccentric dresser and being covered in tattoos back in the early 90’s meant I have seen ever look possible. :-))

Governments are so crooked these days and it seems there is no great place for folks with disabilities to be treated properly anywhere around the globe. I do hope everything works out for you. Blessings to you.

We’re building our own little house, and I absolutely understand some of what you’re feeling. My RV will move whenever and wherever I want; a house will not. It’s such a big change, being tied to that one little house forever and ever. It doesn’t matter that I’m being given creative freedom to make it my own; the fact remains that it isn’t my RV and it doesn’t move and I am terrified of that changed. So I’m sending you (((hugs))), because even though our situations are different I totally get where you’re coming from. Emotions are completely illogical and I can’t do anything to change them😕

I envy you the fact you are starting totally afresh with the freedom to make it your home forever. Part of my muddled head I’m sure is being caused as this is the first home I’ve ever own and poured everything into. Them my MS took away the opportunity to do what you’re doing, that was our ultimate dream. 18 years on we know that dream is dead, and I think that is making it even harder.

You have to go for it, make this new home totally every dream you have ever had, then enjoy the dreams it will supply in the future :-))

My big anxiety is that I’ll forget to plan for some eventuality, or get it wrong, or any number of the things that we get anxious over; that I’ll somehow get it wrong, or change my mind and wish to escape… I’m sorry you’re dealing with so much right now (((hugs)))

Hi. Change is the only constant in this world. And it makes me panick too… ANY type of change. Any piece of new furniture, a different piece of jewelery, letters from the government… I think because our health is so undependable we become focused on what we can control. Atleast that is what I think my issue with change is. I need to feel safe, because my health makes me feel unsafe. ~Kim

The need for routine is a recognised part of many chronic illnesses and this is blowing my routine into dust. Last night Adam came home to a shaking mess, and all that happened was having the handyman here to sort out those niggly jobs that needed doing.

Adam has taken next week of work, just to try and keep me a little calmer, I’m just trying to hold onto the fact that it’s just one week and it’s over 🙂

It will be hard. It just is. Especially for those of us with chronic illnesses. Hang on, remember you are feeling fear, you are not in danger… it is one week. (But it’s gonna be tough!) It will end! Thinking about you! ~K.

Must have missed this one. As I search for your writings I feel I know you on some level. I think I mentioned this before. I feel connected as I’m sure most of your readers do. I just wonder if there is anyway you could let anyone see the pics you said we’re online before you started this blog??? I would love to see what you look like and see your house before and after you did your updates. He, I put my pics on here so would you ever consider doing the same?? Love and prayers for you as always and just fyi., Joey has now had 9 months of chemo, and it got harder each time to recover. Jan. 3, 2019 is his next scan. I’m praying hard that he will be so much better because I Don’t know how much more chemo he can take. Please help me pray for him. 😘😘